I Didn’t Get a Crystal Ball

November 3, 2018

The past 6 weeks have been a whirlwind of diagnostic MRIs and CTs, surgery to remove one metastatic tumor from my brain and decide what to do with the second one. The hardest part of this is running into the Radiation Techs from my breast radiation at the other hospital where I was meeting the Radiation Oncologist who will be treating the second tumor. There are others, but these stood out to me for some reason.

I don’t want pity for where I am with this crappy disease. It’s not warranted. Yes, my cancer decided to take root in my brain and cause a bunch of issues. It was what really moved my cancer to Stage IV for me. I have a Franken-scar on the back of my head where 15 staples were used to put my head back together. BUT… this ain’t over til it’s over. I haven’t run out of options.

The really pitiful looks from those staff people hurt. Yes, I know the statistics. They’re awful. I’m trying to put them aside for now. I haven’t run out of treatment options yet. I’m only on my 2nd line of targeted chemos. There are others out there if the one I just started don’t work. Plus, there are new therapies and treatment options that are coming out regularly enough that I am not worried about this yet. I’m sure it won’t be horribly long before it does get more desperate.  I also have options to maybe start a clinical trial at the Seattle Cancer Care Alliance (SCCA), which is affiliated with the Fred Hutchinson Cancer Research Center and the University of Washington. and I’m also still looking at the possibility of getting a second opinion from MD Anderson in Houston.

There will be plenty of time for pity when I get to the end of the treatment road and either nothing’s working, or it’s stopped working and I have no more options. I want to believe that’s at least 5-15 years out. Who knows what they will learn and bring to market that will work for me and give me that amount of time? Hopefully a better understanding of how the disease progresses that they can put a stop to it. Or maybe we’ll finally get to a point of individualized medicine and genetic therapies. I want to believe that I’ll live long enough for those things to happen and maybe work for me. I was told how we’ll treat any new metastases in my brain and I’m good with how that will work.

In the meantime… I’ve got a diagnosis. Neither I, nor any of my doctors, were given a crystal ball to tell me what’s next or how much longer I will have. Yes, the numbers suck, but they’re just that. Numbers. Statistics. Like cancer, they don’t fit all situations. This disease is really bringing home for me that dealing with this and the mental drain it brings is all about living life one day at a time. So that’s what I’m doing. I’m grateful for every day that I wake up to see the sun and hear the birds. I’m grateful for being able to work and do things I enjoy. This is what life is about right here. Being grateful for what I have and being able to enjoy life.

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Neuropsych Assessment – Chemobrain

November 2018

I was supposed to go to the hospital and meet with the Neuropsychology team to evaluate my chemobrain. I was too sick to go. Things got crazy for several months afterward. I’m debating now, in June, if it’s worth going in for the assessment. I still have some serious chemobrain moments. I still have trouble remembering things. I can feel my brain re-wiring itself in some cases, but for where I am with everything else… I’m not sure it matters to have it assessed anymore.

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Another Perfect Storm

November 30, 2018

The days that I have the energy to go do things are still fewer than the days that I putter around doing laundry and sleeping on the couch. One of my friends had a baby the week before Thanksgiving. I brought them treats and helped with their pups til they could get family there to help out. I felt okay Thanksgiving Day. I made a turkey with all the trimmings. By the time dinner was done, I was beat, but I felt okay. The next day, I was okay for a while, and then I took a nap right before dinner and woke up with a sore throat and no voice. By Sunday, it was a full fledged cold. When I talked to the doctor Monday, she said it sounded like a virus and to drink lots of fluids and eat lots of soup. I took that advice. I picked up some chicken soup from the local Chinese restaurant along with my other Chinese comfort foods.

This is what i get for trying to get my Christmas shopping done before Thanksgiving and Black Friday so I don’t have to be out in all the crowded malls and stores.

At the end of the weekend, I noticed that I was getting a rash on my chest. I looked up the side effects of the targeted chemotherapy, Kadcyla, and saw that a rash was a possible side effect. By Tuesday, it was moving. I let the oncologist know about it and told her I’d keep an eye on it and let her know if it changed. Well, it changed. It was getting really angry and painful. I sent her some pictures and she said it looked like Shingles. So, it’s not related to the targeted chemo. That’s a good thing. Bad thing? Shingles suck.

According to Mayo Clinic, shingles are common for cancer patients who’ve been on chemo and radiation, and/or have been on long-term doses of steroids. Ding! Ding! Ding! I win! Well, not really.

This is about what my back looked like at the beginning. It got a lot worse. I still have scars from it now, 9 months later.  Shingles suck. This rash is really painful. It tingles and burns. I haven’t been able to sleep through the night the past 3 nights because of the pain, and when the pain wakes me up, I start coughing. It’s fun cycle.

Shingles

The oncologist called in an antiviral medication that I started taking as soon as I got it this morning. One of the nurses also suggested that I get some sunburn spray – something with lidocaine or similar pain killer in it. I got some and it did help a little. A few hours after the 2nd dose, I noticed that the pain was a lot less than it had been on my left shoulder. This will mean that I can hopefully sleep through the night. I’m looking forward to being pain-free tomorrow.

Thankfully, I’m still on leave from work so I can just go back to sleep and not worry about having to be anywhere. Well, at least not for the next few days. I’m basically quarantined. I can’t be around pregnant women, newborns or anyone who hasn’t had chicken pox. I have some friends who fall into all 3 of those categories. I’m happy to stay home and keep this to myself. The last thing I’d want is to give this to anyone else, or chicken pox when they’re not able to fight it off. I’m hoping that both of these viruses are gone by the weekend. Not that I have anywhere to be, but I’d like to have the energy to do some more cleanup in the house.

Updates:

My cousin got married in December, and I flew to California for the wedding. My shingles were in full on gross mode by the time I got home. I don’t remember now when they actually went away. I want to say the rash was still visible into March.

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Updated Timeline

I know things have gotten a little difficult to follow, so I’ll recap the last year or so.  I’ll do some posts that have more details for each of the milestones later.


 

May 2018: Lumpectomy Surgery

July 2018: Pre-radiation scans show new growth in the lymph nodes in my chest that is confirmed by biopsy. Started new chemo (cisplatin) and completed 7-1/2 weeks of radiation.

August 2018: Radiation across over 1/2 of my chest. I burn a little.

Sept 2018: Radiation follow-up & MRI confirms 2 lesions (tumors) in my brain.

Oct 2018: Craniotomy to remove the larger of the 2 lesions, which is in the parietal lobe of my brain.

Nov 2018: Radiation on the 2nd lesion in my brain, which is in the occipital lobe.

Dec 2018: Tumor bed from the larger of the brain lesions is shrinking. That will be radiated later. The radiated tumor is shrinking. New problem – there is an abscess in my brain. I am admitted to the hospital where the neurosurgeon drills a burr hole to partially drain the abscess and get a sample of the fluid to determine which antibiotic will be best to treat it. I get sent home with IV antibiotics.

Jan 2019: My body doesn’t like the antibiotic, so we changed to a new one. I had a couple of things going on that took me to the ER. Another new tumor was discovered in my cerebellum. I was admitted again with left side weakness and tingling. I spent a week in the hospital unable to stand or walk un-aided.I was discharged to an acute rehab unit where I started out with a walker, graduated to a cane and got sent home before I was really ready. Had more brain radiation – this time on the tumor bed where the larger one was removed, some area in the occipital lobe, I think, and to the one in my cerebellum. 

Feb 2019: Snowmageddon hit Seattle. I had home health nurses and therapists at the house nearly daily for 2 months. I was walking un-aided at the end. My vision starts getting really wonky. I am in the optometrist’s office at least once/week to get refracted and get new contacts. My prescription went down by half and then creeped back up again.

March 2019: More fun with vision issues. I can’t drive because I can’t guarantee I can see for a day, so I’m working exclusively from home. At the end of the month I started some outpatient physical therapy.

April 2019: Continuing vision issues. The abscess is finally decreased enough to call it gone. I am taken off the IV antibiotics that I’ve been on for 3 months. The tumor in my cerebellum is resolved. The others are stable if not shrinking. I met with a neurologist to see about getting off the preventative anti-seizure meds I’ve been on since the surgery.  New scans show more concerning activity in the lymph nodes in my chest. We switch chemos again.

May 2019: I am one=year post-lumpectomy. I met with an oncologist at the Seattle Cancer Care Alliance to discuss possible drug trials. There are two trials opening in June that I qualify for. They are waiting for State approval. I am now on two oral chemos. Vision is more stable.

June 2019: Continuing on oral chemos and outpatient physical therapy. I’m still working FT from home. Now that I’m off of most of the other drugs, I’m getting more of my energy back. I’m able to start getting some of my clutter cleaned up again. The oral chemos have a side effect called hand and foot syndrome. This can cause my skin to blister and slough off. I’m using a cream with urea in it (Gold Bond Nighttime) on both my feet and hands twice a day. I wear light socks and manicure gloves to bed. Next scans are in July. If this chemo combo is working, we’ll need to decide whether to continue with this treatment or enroll me in one of the trials. Vision seems relatively stable. I had one episode of double vision for about 2 minutes that freaked me out. I’m due for a full eye exam anyway, so I’ll be getting that checked out and probably yet another pair of contacts.

More detailed posts to come…

Posted in Uncategorized

1 Month Post-Op – Brain Surgery

November 2, 2018

I am now 4 weeks post-op from having the larger of the two metastatic brain tumors removed from the back of my head.

I have one spot on my incision that isn’t done healing as well as the others. I followed up last week with the Neurosurgery PA and a nurse. after noticing some blood tinged gunk on my pillowcase. They did a blood panel last week to make sure there’s no infection going on. The Neurosurgeon says my blood work is normal for someone who’s had surgery, and where I am with my targeted chemo. He also said that there were some dissolving stitches under the staples that sometimes get inflamed. I’m hoping that it just heals up and goes away.

My vision has changed pretty much every day for the past 4 weeks. Each day is different as to what I can see. There isn’t anything particularly good or bad. It’s all just different. I’m able to read a little more. I can mostly see at distance pretty clearly most days. . The one thing I still can’t do is read anything with my bifocals on. It’s so weird that contacts and drugstore readers work fine, but prescription glasses with essentially the same reader prescription don’t. Some of the blurriness there is more likely the steroids than the tumor, but it’s hard to tell at this point.

After going back and forth between both pair of new glasses (regular progressive bifocals) and my new readers vs old readers, I found that my older glasses were still working better than the new ones, and contacts were still the best option out of all three. I returned the new glasses this week. I’ll be able to get a new prescription for both pair again in a few months after everything seems more stable vision-wise.

Other than that, I am feeling more and more like myself. When I first came home, walking outside was a little scary. My feet didn’t feel like they were mine for almost 3 weeks. It was like I was kind of floating off the ground – a really weird feeling. Not being able to walk and look around was a little freaky, too. I did find that natural light is a lot easier to handle than inside lights. I’m going to have to look around for some natural spectrum flood lights for my kitchen. The glare there is hard to navigate on the days that it’s raining outside, and seeing as Seattle’s getting ready to head into the rainy season, I need to deal with that sooner than later.

Driving has been a little bit of a challenge yet, too. I tried to drive somewhere between weeks 2 and 3. I got as far as the Starbucks on the corner and came right back home. It was too much multitasking for my brain to handle. I did some driving again at 3 weeks to run a few errands and go to a couple of appointments. I am okay during daylight hours and on back roads where there isn’t a lot of extra lighting. When I returned the glasses, the lighting at U Village was really hard to navigate both walking and driving.

This past week for my radiation appointments, I’ve used the American Cancer Society Road to Recovery program that one of the social workers at the hospital helped set up for me. There are volunteer drivers, taxis and ride share programs participating. It’s been a great program so far. Cancer patients get $500/year to spend on rides to cancer-related appointments. It’s been really helpful for me with all the changes in my vision to not have to worry about getting down to the hospital in daylight and come back home in the dark. Most of my rides have been with Uber so far. I’ll be happy when Lyft starts providing charitable rides here in Seattle. They are providing rides in Las Vegas and Miami, and are now piloting their partnership in  Atlanta, Philadelphia and L.A.

So now, it’s just time to heal from surgery and radiation for a few weeks. I’m looking forward to just being for a while. There’s been way too much going on for the past 6 weeks and it’s time for some ME time.

 

 

 

 

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Recovery from Brain Surgery

October 1-24 2018

I am now 3 weeks post-op from having a metastatic brain tumor removed from the back of my brain. I’ve been working since about the 4th day after surgery. My incision is healing nicely. My vision’s not completely back to “normal” yet, but I’ve seen some positive changes already. I’ve been going back and forth between my old and new glasses and readers and my contacts. For the most part, the contacts with one pair of readers or the other seems to work best when I need to see the laptop screen. I’ve finally gotten to where I can see my phone screen with readers on as well. There are still things I’m missing right in front of my face, but the peripheral vision seems to be slowly coming back. Very slowly.

Something new after surgery is a problem with glare from artificial lights. I think it’s more in my right eye than my left, and I think it has something to do with the giant floater I have there after the gel sac decided to release from my retina last fall, but it has been a big issue that’s been a struggle to overcome. While my friend the RN was here, we ventured out to make sure I could handle life after she had to go home. Target was a no-go because of the glare from the fluorescent lights.  The grocery stores were a little better. After she left, I made myself walk up the block to Starbucks every couple of days. Both the walking there and trying to look around and be cognizant of what’s going on around me, and sitting in the dining area were an act of making sure that my brain is actively re-wiring itself to compensate for what’s no longer there. I’m not 100% yet, but am feeling a lot more like myself today than I was a few weeks back. As they say in the business, it’s a process.

Something that’s hard after surgery is working around the restrictions. When I had the lumpectomy, I was not allowed to lift anything more than 5 pounds. This time, I can’t lift more than 10 pounds, I’m not allowed to bend over, I need to sleep at a 30 degree angle – I can’t lay flat and no straining while pooping. I am supposed to wash my hair every day and keep the incision dry.  The hardest thing is not bending over. I had to arrange things in the house so that they were at least at waist level, so all of my counter tops are covered with stuff. That’s a little annoying. It’s sometimes a challenge to load/unload the dishwasher, and I need someone to come and help with the trash, and to put clean sheets on the bed.

Keeping the clutter down has been a huge challenge since starting this journey nearly a year ago. My sister set up my bike trainer before she left. I still have about a week before I can go down and ride because I’m still on post-surgery restrictions. I can manage some short walks. Between chemo recovery, surgical recovery and just cancer in general, I have next to no stamina for much of anything.  I need to get some of my strength back. The issues with my vision make me nervous when I’m out, though. One day at a time.

 

 

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Think Before You Pink

I promised a post on donating to cancer-related organizations, specifically those for breast cancer and breast cancer research.

Susan Komen puts only 7% of their annual budget toward breast cancer research. They spend their money on advertising for awareness campaigns. While it’s important to inform women about getting screened for breast cancer, 116 men and women with breast cancer die every day. We deserve better.So, if you want to make a difference for the 3 million women already diagnosed with breast cancer, please consider donating directly to places that are researching ways to keep us alive longer until there is a cure.

Places to Donate Where the Money Goes Directly to Research

Dana Farber Cancer Institute – Boston, MA

David H. Koch Institute for Integrative Cancer Research at MIT

Fred Hutchinson Cancer Research Center – Seattle, WA

The Jackson Laboratory Cancer Center

Masonic Cancer Center, Minneapolis, MN

Mayo Clinic, Rochester, MN

MD Anderson Cancer Center – Houston, TX

Memorial Sloan Kettering – New York, NY

Norris Cotton Cancer Center at Dartmouth

Purdue University Center for Cancer Research

Rutgers Cancer Institute of New Jersey

The Ohio State University Comprehensive Cancer Center

University of Michigan Rogel Cancer Center

University of Wisconsin Carbone Cancer Center

Yale Cancer Center

 

#ThinkB4UPink

 

 

 

 

 

 

 

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